We dont really 'fit in' anywhere

Robyn technically wasnt a premie at 38+3. She was in the SCBU/NICU/PICU's till she was a month old and after various surgeries. Since then she has been in a couple of childrens wards. So in a way i dont feel like we fit in here well. She has been diagnosed with a syndrome but no one on this forum has responded to my threads about it and as its so rare 1 in 10,000 births worldwide it seems she is the only on ehere with it. So its hard to feel like we fit on the special needs board too.

And as she is quite developmentally delayed due to hospital time we definitly dont fit well in baby club.

I find it hard to have a four month old baby who is only just about able to hold her head up and weighs only 4kg when my friends babies of the same age are all 'small' breastfed babies weighing around the 12 pound mark. She is 20 weeks and has only spent about 5 weeks home in small bursts, 3 days here, 5 days there etc then she gets sick again and we have to go back.

The nurses all act like im strange cos im not the doting mum who never leaves the side of her child in hospital. But they dont usually deal with babies in for so long and four months later i cant keep 'not' sleeping at the hospital i need to rest too, plus i have an 18 month old at home who they wont allow to visit so if im with her i cant be with him and its not fair for him to never see me. They keep saying but cant your mum/sister/aunts friends dog look after him. They dont seem to grasp that yes they would look after him but I WANT to see my son.

And there was one day i just couldnt fce going to the hospital a few weeks ago, i hadnt seen my son in days, we were in the middle of moving house and i was so exhausted i just needed a day of not listening to lots of crying children and sats monitors and the next day they had a senior nurse phone me to find out 'if something was going on' and recorded in her notes that mum is having 'bonding issues'. I was furious I suffered from PND with my son and am still seeing a pyscolocgist as a result and she ended up in a sitdown meeting with this nurse to explain my reasoning about needing a break cos i took the actual day of moving house to not visit the hospital. I had also told them we were moving house that day so its not like they didnt know.

Just feeling very much like nobody gets what its like for me. Even DH at times seems to have his head in the sand over what our LO's future might be like and he and my whole family keep telling me itll be fine.

you sound amazing that you are there so often. I cant believe they called you when u had one day off. When i was in nicu i saw mums not turn up for days on end, i heard one girl say she fancied a day in bed and cudnt be bothered to come in. I was there every day, and they said it was v rare. Surely they must know you have been doing it for so long, no one shud worry u have one day off. I cant imagine what u are going thru, i was so scared of having another preemie, because mainly i knew i wud have to split my time between my son and baby.
the mums here are rele nice, its not jsut for preemies.

I can well believe they'd make comments if you weren't there 24-7... another mum whose daughter was in the cot next to mine in NICU wasn't allowed to visit (because she had her MIL in the same hospital with something and they were concerned about infection control) - and there were still a few snidey comments made about it all (despite the fact the poor woman was chained to a breast pump pretty much 24-7 doing what she could!)

It's one of the things that really got my goat with the NICU stay - was just the perception that the parents' lives outside the unit were worthless - they'd do things like at 3am talk among the staff (I was down there at that time since I was being kept in on the ward and you don't get sleep on post-natal wards so I figured I'd go do something more productive - plus the night staff generally let on more about what was actually going on than the day staff) about "ok so give X's mum a ring and get her to come in in 30 minutes time to do a breastfeed" - at 3am - no acceptance of other kids in the household (and I know there were siblings in that case as the cot had photos up of them in it) or anything... I'd have to say that that ignorance of other kids is my biggest fear if this pregnancy goes premature again - to the extent I'm actually putting a note on my birth plan that if a NICU stay is required, please accept I have a still-very-little girl at home who needs her mummy as well and help facilitate balancing the two sets of demands out.

As for not fitting in - yep lots of us get that feeling (particularly where competitive milestoning is concerned). If the syndrome is so rare that support groups for it specifically are hard to find - are there any more general groups around, either linked to the children's wards of the hospital you've been at or linked to the same general type of syndromes?

It can be very isolating. And whilst we here might not have had a child with the same syndrome, we do understand what it is like to have a baby in NNICU, and to have a baby who is not doing what they should for their age. And we also understand what it is like to have to deal with people who don't understand. So we are all here for you!

There is another mum on here who has two little ones with a very rare condition and has spent a lot of time in NNICU and children's ward with her LO's. I'll give her a nudge to come on and take a look at this thread, as I'm certain if there is anyone who will know exactly how you feel, it is her.

Sorry you are going through such a rough time. There is another girl on here with 2 children with a rare chromosone disorder and spent a long time in hospital with her daughter so she will understand what you are going through. Hopefully she will be on soon.

You are doing amazing coping with a toddler and a baby in hospital so try and ignore the nurses.

I'm so so sorry you are being made to feel how you are hun with other children at home the NICU staff should be applauding you for being able to spend time both at home and in NICU. And they should surely appreciate that you need a day to yourself! Especially if you are moving home and have already told them. Sending you lots and lots of love hun xxxxx

I can well believe they'd make comments if you weren't there 24-7... another mum whose daughter was in the cot next to mine in NICU wasn't allowed to visit (because she had her MIL in the same hospital with something and they were concerned about infection control) - and there were still a few snidey comments made about it all (despite the fact the poor woman was chained to a breast pump pretty much 24-7 doing what she could!)

It's one of the things that really got my goat with the NICU stay - was just the perception that the parents' lives outside the unit were worthless - they'd do things like at 3am talk among the staff (I was down there at that time since I was being kept in on the ward and you don't get sleep on post-natal wards so I figured I'd go do something more productive - plus the night staff generally let on more about what was actually going on than the day staff) about "ok so give X's mum a ring and get her to come in in 30 minutes time to do a breastfeed" - at 3am - no acceptance of other kids in the household (and I know there were siblings in that case as the cot had photos up of them in it) or anything... I'd have to say that that ignorance of other kids is my biggest fear if this pregnancy goes premature again - to the extent I'm actually putting a note on my birth plan that if a NICU stay is required, please accept I have a still-very-little girl at home who needs her mummy as well and help facilitate balancing the two sets of demands out.

As for not fitting in - yep lots of us get that feeling (particularly where competitive milestoning is concerned). If the syndrome is so rare that support groups for it specifically are hard to find - are there any more general groups around, either linked to the children's wards of the hospital you've been at or linked to the same general type of syndromes?

Thats exactly it the feeling that nothing matters except whats going on in the hospital. We were being pressured to get the new house suitable for robyn to come home during the move and despite me begging on the phone the council gas man wouldnt fit us in early to have the gas turned on. So Im not bein g entirely unreasonable to think you wouldnt bring a hospitalised baby home to a house with no heating right? But yeh they complained that we had to wait a few days on that. And when the senior nurse had phoned me in and I asked how long the meeting was going to take she was very rude with her 'why are we keeping you from something?' well yes your keeping me from getting the house ready so i can actually bring her home like you want? Then she showed up 45 minutes late after i told her i didnt have much spare time. When i called her on it she said 'yes but I'm busy. My time is very important' I almost exploded at her cos apparently my time isnt.

Quote:

Originally Posted by Foogirl

It can be very isolating. And whilst we here might not have had a child with the same syndrome, we do understand what it is like to have a baby in NNICU, and to have a baby who is not doing what they should for their age. And we also understand what it is like to have to deal with people who don't understand. So we are all here for you!

There is another mum on here who has two little ones with a very rare condition and has spent a lot of time in NNICU and children's ward with her LO's. I'll give her a nudge to come on and take a look at this thread, as I'm certain if there is anyone who will know exactly how you feel, it is her.

It's nice to know some people do understand the feelings if not exaclty whats going on day to day. One f my biggest fears going on is people judging her based on how 'normal' she seems.

Charge syndrome can affect every child who has it in different ways. Some physical, some mental. Luckily so far she seems to have a very mild case of it. The only physical characteristic she outwardly displays is her ears. And while they are very soft and noticeable if you are looking at them first glance they arent noticeable, and beign a girl she could always grow her hair out over it. While I'm thankful for this it also worries me she looks normal.

What happens as she gets older? She has been encouraged to use a dummy as she is tube fed and they want to keep her sucking instinct as well as keeping her used to having things in her mouth so hopefully she will eventually wean to normal eating. What if she doesnt and needs a dummy until she is quite a bit older? (some kids are eating pureed food still at age 4). She WILL walk (so thankful) but the average age is 3-4 years, she WILL talk but again the average is later.

I'm worried about how to handle walking down the street with my relatively normal looking 4 year old in a pram, sucking on a dummy not able to talk yet and having 'baby club judgey types' look at me like i'm just some rubbish lazy mum who cant be bothered with her.

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